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Multiple Myeloma- Caregiver rights and responsibilities-

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A caregiver or carer is an unpaid or paid member of a person’s social network who helps them with activities of daily living.[1] Caregiving is most commonly used to address impairments related to old age, disability, a disease, or a mental disorder.

As a long-term multiple myeloma survivor, I’ve often thought that I have the easy job. It is my wife, my caregiver, who has the difficult job.  When a loved one is diagnosed with cancer your instinct will be to want to help. The key is to understand what it means to help the cancer survivor. The role of primary caregiver to a cancer patient is difficult, unheralded and often thankless.

The article linked below should serve as an outline of what to expect when you are thinking about life as a cancer caregiver. I’ve excerpted 10 main issues for each caregiver to focus on at the beginning of his/her caregiving experience. I’m not saying that following each one of these 10 points will be easy but I am saying that each of the 10 issues below is important to the caregiving/surviving cancer experience.


thank you

David Emerson

  • MM Survivor,
  • MM Cancer Coach
  • Director PeopleBeatingCancer

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1) “I have the right and the obligation to care for myself while caring for the person with cancer..”

2) “We deserve a first-rate medical team that will become partners who treat us like real people whose feelings matter…”

3) “Don’t hesitate to seek out second opinions, or even third ones, and seek out a healthcare team that appreciates both the physical and the emotional aspects of the disease…”

4) “Hire professionals who will partner with you, setting goals with you and exploring options at each treatment decision point…”

5) “Ensure that the team you choose has after-hours phone coverage, encourages your questions, speaks in layman’s terms instead of “Doctor-speak,” and values your push-back when necessary…”

6) “We have the right to ask about the costs of treatment and to understand what insurance does and doesn’t cover…”

7) “We have the right to access palliative care (to minimize adverse side effects of treatment and increase patient comfort) from the beginning of treatment, no matter the diagnosis…”

8) “Quality of life is a central issue in the cancer experience…”

9) “A loved one’s death has repercussions for years for every member of the family. It involves lots of choices that may both allow the patient a comfortable and anxiety-free death but that may also create positive memories to help family members heal…”

10) “Despite improvements in survival rates, cancer will strike one in two men and one in three women during their lives. Three quarters of families will find themselves caring for a cancer patient. Lessons like these from experienced caregivers are valuable resources to new caregivers for taking charge of the caregiving experience…”

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